Do you ever wish you had more opportunities for raising awareness about FPIES? Are you ever unsure of where to get started with raising awareness? The last day of February each year is “Rare Diseases Day;” this awareness day sponsored by NORD (the National Organization for Rare Disorders) is a great time to spend time raising awareness for FPIES.
Where to begin? Especially this year, when many of us are homebound and events are typically virtual, it can be a struggle to get started. No worries—we have a great list of ideas to get you on your way to being a voice for awareness!
- Is your child in school? If he/she is attending classes virtually or in-person, a great way to start the conversation about FPIES is by sharing a book with your kiddo’s class. You can do this virtually! Check out the Kids Spot on our website to find a Youtube video of author Claudine Crangle reading her book, “Woolfred Cannot Eat Dandelions.” Though not specifically about FPIES, Woolfred the sheep’s experiences with dandelions certainly resemble features of FPIES reactions and can help children (and adults, too!) to better understand this condition. Simply send the link along to your child’s teacher, explaining that you would like to help raise awareness about FPIES, and see where the conversation leads from there.
- Does your child attend daycare or are you considering enrolling him/her in preschool in the near future? Reaching out to schools and daycares and sharing links to the Online Learning Library at our website is a great way to spread awareness and to help childcare professionals prepare their classrooms to be safe and friendly for your child affected by FPIES.
- Social media posts or blog posts are still a great way to raise awareness! You could consider sharing a small part of your family’s experiences with FPIES or simply link out to resource pages for medical professionals, community members, and teachers to learn more about this often poorly understood condition.
- Create awareness art at home! Stuck at home? Create awareness art with your little ones and if comfortable, share online in honor of Rare Diseases Day! You could create art that reflects your experiences with this condition, or simply have your little ones make handprint art in the shape of the Rare Diseases Day logo. See Rare Disease Day “Get Involved” section for coloring sheets and other activities. Download and print “Care About Rare” sign from Global Genes.
- Connect with local pediatric offices! Most people are getting pretty savvy at video conferencing by now, and if comfortable, you could offer to speak with the pediatric staff via conferring about your family’s experiences with FPIES in order to raise awareness. Staff may not be familiar with this condition and hearing about a family’s first hand experiences can help them to learn more.
- Connect with a medical school and ask if they are interested in hearing about your family’s experiences living with a rare condition. They may be interested in having you speak to their students so that the students can learn more about FPIES and ways that they can help families when they become practitioners after their schooling.
- And of course, wear your FPIES gear on Rare Diseases Day, especially if you have video conferencing for work, school, or any other reason. Even if you are free of video conferencing, wear your awareness gear and take a picture for social media. Every step of awareness helps!
Of course, these are only a few suggestions to get started. We would love for you to reach out to us and let us know how you plan to spend the day! Be sure to check out www.rarediseases.org and https://fpiesfoundation.org/rare-disease-day/ for more information!
This post was written by Amanda LeFew, The FPIES Foundation Co-Director.